Patient Comments: MELAS Syndrome - Symptoms

What were the symptoms associated with MELAS syndrome in a friend or relative?

Comment from: Jessie, 45-54 Female (Caregiver) Published: August 18

My mom was diagnosed with MELAS after an intestinal blockage landed her in the ICU. During this time we were lucky enough to be placed in the path of a doctor who put all of my mom's various medical conditions together and did a muscle biopsy. This was about 7 years before she passed away from her second known stroke. I believe she had unknown stroke like episodes before and after diagnosis. She suffered from hearing loss, diabetes, IBS (irritable bowel syndrome) and blocked intestines resulting in a colostomy bag. She had diminished cognitive function due to a stroke at the age of 42. She was very petite and also very muscularly weak. I believe that my grandmother and my uncle suffer from MELAS as well but no formal diagnosis has been made. I struggle with the decision to get tested. I'm 25 now and although most patients present with symptoms before the age of 20 my mom didn't get sick until later. If I get tested then I will think every little thing is because of the MELAS, but on the other hand even though I know I have the gene I might not be affected.

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Comment from: KarGow, 19-24 (Caregiver) Published: January 14

My nephew was diagnosed with MELAS at 10 years old and died aged 19 years old. The final 3 years of his life he was blind, deaf, had a feeding line in and had dementia. My sister (his mother) died a horrific death due to MELAS last year. I just recently lost my eldest cousin aged 47 years old, he was deaf, blind and demented. I have been diagnosed with it and brain scan shows past stroke like changes. I'm deaf, eyesight is poor, diabetic (all family members were diabetic) and I am in constant pain with all over muscular pain. I suffer dizzy spells, can't walk in a straight line and my memory is getting bad. I'm 46 years old. Thankfully, I never had any children. My heart goes out to anyone else out there either living with this illness or caring for a loved one.

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Comment from: Tanisha, 25-34 Male (Caregiver) Published: November 19

My husband has MELAS Syndrome, he was diagnosed in January 2012 after having a second stroke. First stroke was in October 2011 and we didn't even know he had a stroke, he was 30 at the time. January 2012, he had a seizure at home and only on the second admission did they diagnose it as MELAS. It is 2014 and so much progression with his hearing, weight loss, being a diabetic now. It is scary as I don't know what to expect in future.

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Comment from: Tracy, 45-54 Male (Caregiver) Published: September 11

My husband was diagnosed with MELAS at the age of 48 after suffering from his 3rd stroke. It is four years, 7 strokes and the loss of 35 lb. from a 147 lb. frame later. There is very little support out there for this illness, most doctors do not know how to approach. My husband first started losing his hearing at 30, was diabetic at 44, and had his first stroke at 48.

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Comment from: igarcia, 3-6 Female (Caregiver) Published: August 14

I had a brother who passed from MELAS at the age of 18, a sister who was diagnosed at age 8 and is 25 right now. My daughter just had stroke like episodes and is now diagnosed with MELAS, she's 5. It's very difficult.

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Comment from: sarin, 3-6 Female (Caregiver) Published: January 27

My son aged 4 is suspected to have this cruel disease MELAS syndrome. He has been having epilepsy since he was 1.5 years old, he was normal for one year, now he is in bed, with no movement; it's like I'm losing him day by day.

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Comment from: johan, 45-54 Female (Caregiver) Published: July 24

My wife and daughter had MELAS syndrome. My wife became demented at the age of 46, and two years later, she died at a final weight of 28 kg. At the same time, they found out that my daughter had the same illness. But she was in a worse stage; she was 23 at the time. She became demented and had strange effects because of the MELAS. She became deaf, stopped eating, and had no energy. She died one year after my wife. The worst part is that you do not get any support. I lost everything due to MELAS syndrome. It's a cruel illness.

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